MPR: Dreaming Awake

Dreaming Awake Part 1: Living with Narcolepsy
By Stephen Smith
September 2, 1997

Many Americans regard narcolepsy as a laughing matter, as an amusing condition in which your sleepy-headed Uncle Joe abruptly dozes off at the holiday dinner table. But narcolepsy can be an acutely disabling sleep disorder, one that doctors often fail to diagnose. People with narcolepsy struggle against sudden daytime sleep attacks, against temporary paralysis and even hallucinations. Almost a quarter-million Americans have the disease. It's as common as epilepsy or multiple sclerosis but usually goes undiagnosed. Many Americans may have mild forms of the ailment and not know it. Medication can make narcolepsy more tolerable, but the social and emotional damage caused by the condition is harder to heal.

Brian Hunter could tell something was wrong his freshman year in college. Brian took so many naps between classes that his pals called him a hibernating bear. But bears are pretty energetic after a snooze. Not Brian.

PHOTO: Medical lab technician Brian Hunter of Minneapolis developed severe narcolepsy in college.

Hunter: A lot of times, I may not look it, but I am so tired I almost wanna cry. It's like, let me just sleep. If you think about yourself, if you've ever been up for a couple days, you don't really care if it's a sunny beautiful day, you just want to sleep. And that's fine, once in awhile, but if you can think about life where every day is a sunny day and you'd rather just be in your bed sleeping, it's pretty dramatic.

The most common marks of narcolepsy are nighttime insomnia and abrupt daytime sleepiness. Some people even fall asleep in the middle of an intimate conversation. In addition to the suffocating exhaustion, Brian has another symptom: sudden attacks of muscular paralysis. The first of these brief episodes hit on a college camping trip. Brian and his buddies were lounging around cracking jokes.

Hunter: I laughed really hard and I kind of fell on my knees. I couldn't help myself but I kept laughing because it was so funny, I just fell on my knees. So, after that, about every week I'd have two or three episodes where if I'd laugh, say if I was sitting down, laughed, my arm would fall down or my muscles in my face would get weak. Or if I was running around playing catch and someone said something I would get weak in the knees. And there was a time there that my friends kinda used it as kind of a joke. If they're going to throw me the ball and they didn't want me to catch it they'd tell me a joke and I'd fall down and miss it.

This sudden paralysis is called cataplexy. The attacks usually last a few seconds, but can sometimes stretch into minutes. Cataplexy is often triggered by intense emotions like laughter or elation. Brian Hunter is most susceptible in warm moments with family, close friends, or a sweetheart. Sex is a particular challenge.

Brian: A lot of times you'll lose muscle control, um, just foreplay, you'll collapse. Luckily, you're probably laying down so it's not that big a deal. And it just puts a damper on the whole thing. I guess no one's really complained, but you never really know.

Brian is 25 years old. He's a gentle, soft-featured fellow with friendly blue eyes. He has a steady job at the University of Minnesota, is unmarried, and wants to go to medical school. Brian is good-humored about his condition. He's founded a support group called Young Adults with Narcolepsy, or YAWN. Brian takes medications to control the narcolepsy, but even his best days he feels fogged-in by fatigue. Experts say that in narcolepsy, natural sleep events like muscle weakness and dreaming abruptly intrude on the daytime. Doctor Emmanuel Mignot heads the Stanford University Center for Narcolepsy in Palo Alto, California.

Mignot: They may be talking to you and being very, very sleepy, and suddenly they may start to dream, but before really being asleep. And they would hear voices of people talking, and may even see someone coming into the room that doesn't exist. But it's not like a hallucination of someone that had schizophrenia or a psychiatric disorder, because usually they know it's because they are very sleepy and they are kind of dreaming awake. That is different.

An accompanying problem is sleep paralysis - a complete loss of muscle power when drifting off or just waking up. Kris Johnson despises these moments of "dreaming awake" when day and night merge.

The Johnson Family

Kris Johnson: The dreams, hallucinations and things like that are always scary things - somebody attacking me. I kill off my dad and my brother quite often. Those poor guys are always in accidents and things like that in the middle of the night. And you know, everybody's had those dreams too where you try to run and you can't or you try to scream and you can't. It's just you can be wide awake and they happen.

PHOTO: Kris and Eric Johnson of Becker, Minnesota with their two-year-old daughter Kallie. Kris is a teacher who had to stop taking her narcolepsy medication while pregnant with their second child.

Kris is a school teacher in the small Minnesota town of Becker. Her father also had narcolepsy. And while the disorder appears to be genetic, it is not often shared by immediate family members. Kris' narcolepsy can be controlled with medication, but at the moment she can't take the drugs because she's pregnant, and they might harm her baby.

Audio: Johnson household.

So Kris is on-leave from work and stays home with her 2-year-old daughter Kallie.

Kris Johnson: Can Mommy finish doing her dishes?

While her husband, Eric, is at work, Kris keeps extra busy at home.

Kris and Kallie Johnson

Kris Johnson: I do better if I'm moving than if I'm sitting down so I haven't been sitting down a whole lot today which is why Kallie's kinda clingy 'cause I haven't sat down an played a lot today. I've been doing other things. Because If I sit and play I get really tired.

PHOTO: Kallie's boundless energy can be a strain on Kris, who battles the smothering sleepiness of narcolepsy throughout the day.

Kris no longer drives a car because she dozed off too often and had too many hallucinations behind the wheel. The Johnsons arrange their domestic schedule so that Kris is alone with their daughter as little as possible. And they try to make Kallie safe during Kris' inevitable bouts of narcolepsy.

Eric Johnson: She can go up and down the stairs, but we leave the gate up so she can't wander downstairs during the day.
Kris Johnson: In case...
Eric Johnson: And everything's out of reach just to make sure.
Kris Johnson: I had an attack a couple weeks ago. And I fell asleep on the couch. You were outside, weren't you, mowing the lawn?
Eric Johnson: Uh huh.
Kris Johnson: And I fell asleep. I said, Kallie, mommy has to sleep. "Yeah, nite nite." Next thing I knew she had blankets on me and every stuffed animal I think she ever slept with. It was ninety degrees out - I was so hot. I fell asleep and she sat by my feet and played, and I was out for about 15, 20 minutes.

To meet Kris - with her wavy brown hair, her broad smile, and her rattling conversation - you disbelieve that she ever runs out of fuel. Eric Johnson remembers first meeting his wife.

Eric Johnson: Really couldn't tell she had it. I mean, there's just a few instances where she would fall asleep and you thought, "well, that's kinda weird," but...
Smith: But otherwise she was very energetic...
Eric Johnson: Yeah. Normal. What you would think is normal.

Studies suggest that narcoleptics have a higher-than-normal divorce rate. The way Eric tells it, his wife's narcolepsy is something to deal with and not to resent. He seems an easy-going fellow, and even admits there are some marital advantages to the illness. For example, when Kris gets too angry she can topple over flat.

Eric Johnson: So you get into an argument, I'm bound to win if I get her going bad enough. So she's going to fall asleep. (Kris laughs.) I win.
Kris Johnson: We've done that a couple times. I remember one time I was so mad, and I wasn't even thinking and I was so mad, but I was just so mad I was, "Oh! Fine, I'm leaving." You know, goin' for a drive. And I walked down the hallway and I got to the door - and I fell flat on my face into kitchen. I had just gotten the apartment door open. And then you were so nice to me, until I was fine. The you went right back to being mad again.

Kris and Eric Johnson work hard to accommodate narcolepsy. Like many others with the condition, Kris now looks back at her teenage years and realizes she started developing symptoms in high school. Studies show that most narcoleptics live with the ailment for more than a dozen years before their case is properly diagnosed At Hennepin County Medical Center in Minneapolis, pediatric sleep expert Jerry Rosen says that narcolepsy usually takes hold in adolescence. Because the disease typically goes unrecognized for so long, Rosen worries that narcoleptic children get ambushed by exhaustion in critical years of their personal development.

Rosen: Almost all have had great difficulty in being successful at school. And this is even with kids who are very bright, very well-motivated. The presumption that the teachers will make is that, in younger kids, they're not getting enough sleep and they attribute that to the parents not doing a good job parenting. As the kids get older the presumption the teacher will make is that the kid is on drugs, or is just bored or dumb.

In adults, untreated narcolepsy can also be profoundly disabling. Mark Mahowald, director of the regional sleep disorders center at Hennepin County Medical Center, says the affliction is widely misunderstood.

Mahowald: We see many people with narcolepsy who are fired from their jobs because they fall asleep in the workplace. And again, we don't fire people for having angina, asthma, or seizures but we fire people for falling asleep inappropriately.
Audio: medical lab.

Brian Hunter reports that, so far, he's doing well professionally in spite of narcolepsy.

Hunter: So we'll be going in just below the jaw...
Audio: Sound of drilling

Brian is an assistant scientist in a medial research lab at the University of Minnesota. Today he's using a microscope and tiny saw to operate on the ear of a large rodent called a chinchilla.

Brian: The more technical it is, actually, the better, the less problems I have with the narcolepsy.

The technical work keeps Brian interested, and therefore alert. But boring stuff is a real challenge. And late nights are absolute murder. Brian wants to go to medical school, where drudgery and bad hours are requisite. So he says his biggest life challenge - both personal and professional - will be explaining to others his invisible condition.

PHOTO: Brian Hunter operates on the ear of chinchilla in a research lab at the University of Minnesota.

Hunter: Dealing with life is probably similar to someone who has a mental disorder. Chronic depression, or - It'd almost be nice if it was something very obvious. If I was a paraplegic, people wouldn't expect me to be able to run. But I have this sleep disorder and people just think you're lazy or something.
Audio: Sound of drilling resumes

Audio: The cutting surface on these is tangential..
Sound fades.

In Part Two: how narcolepsy affects the machinery of the brain, how scientists study narcolepsy to reveal normal sleep patterns and leading-edge research on narcoleptic dogs.

Dreaming Awake Index - Part Two: Narcolepsy Research

	Sign up to receive e-mail newsletters

	Audio help

	Text: Sm : Md : Lg